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What I haven’t said about my pregnancy

I stopped updating here on the blog about my pregnancy when I was nineteen weeks. Which may not have not seemed unusual given my spotty update history, but unlike things in the past, it was a purposeful move.

During my twentieth week, we had our routine anatomy scan. It went really well and we came home knowing for certain we were having a little girl and that she seemed to be following in her brother’s footsteps – healthy, on target. Not to mention those ultrasound pictures. Cutest baby there ever was (apart from Ezra, of course)!

That weekend, I went away with my mom and sister for a girls’ weekend – extra special at the time knowing for certain there was a new little girl on the way.

During the drive down, I got a phone call.

That day in January was cold, as January is prone to being, but the rest of the day I felt this heat inside me as I tried to process the news I was given. An anomaly. A problem. Further testing. High risk.

At the time, I couldn’t believe my luck – given earth shattering news about our second child, and I was hundreds of miles away from my husband. I had to make my own phone call to tell him what was happening, in between more calls from my doctor’s office to schedule upcoming testing that would either confirm or deny what was suspected. It was a whirlwind unlike anything I had ever experienced.

I pressed for a name for this condition, and I could tell my doctor didn’t want to say. I was asking for information that she was reluctant to give which, at the time, frustrated me but now I can see was her attempt at a gift. Because we all know what happens when we have too much information before we have any answers.

She did give me a name, though. Duodenal atresia is what she told me.

Of course, I googled. Who wouldn’t? When you’re given a medical term, you put it into Google and see what you get. At a certain point, what I was reading was overtaking my thoughts, though, and I realized that those words weren’t our story. They were someone’s story, but they weren’t ours. We had two weeks from that point until we could connect all the dots and really see what was on the horizon. I filed away what I had learned from the all-knowing-internet and tried to stay focused on what I did know – that my baby moved like crazy and I felt her night and day, that no matter what the outcome she was ours for a reason.

When that day finally came, it turned out to be a long one that ended with confirmation. Leading up to the appointment, Alex and I had both settled in our hearts that we would hear a positive diagnosis for this abnormality – maybe as a coping mechanism, maybe just to help square ourselves mentally and emotionally. Either way, in that moment we were unfazed. And I don’t mean that in a bad way; I mean it in that we were able to see past what was going on and look toward what the future would hold. We agreed to further testing to rule out any associated conditions, and we waited for the next round of meetings where the plan of action would be laid out.

I think I had cried as much as I was going to at that point. Some tears were in anger over knowing my baby had to struggle from the moment she was born. Others were from fear that I had done something to jeopardize her health. There were tears of just plain sadness, too, at the uncertainty of life and how silly it seemed to feel so confident about having a healthy pregnancy. Babies are fragile. Pregnancy is a risk as much as it is a gift.

Since that day when we received confirmation of her diagnosis, so much information has come our way and I feel as though we are really just now making sense of it as it looks like this pregnancy is coming to an end and we’re about to move on to the next steps of our girl’s journey. What I mean by that is we’ve been told “this will happen” and “this might happen” and so on – but now we’re actually seeing what all of that means.

We met with the surgeon who will correct this issue, the neonatalogist who will care for her in the NICU, a nurse from the NICU who will also oversee her care, maternal fetal specialists at the hospital where she will be delivered, not to mention countless triage nurses (since after every appointment it seems like I find myself in labor and delivery), lactation consultants, genetic counselors, social workers and other specialists.

We’ve learned that the duodenum is a piece of your small intestine that connects it to your stomach, which means it’s integral for digestion. We’ve learned that sometimes there’s no genetic reason (as in our case) why this doesn’t connect, or gets blocked, but that in that event surgery is the fix. We’ve learned we’re looking at a 4-6 week NICU stay, though really we can’t be sure how long recovery will take. We’ve learned that babies who have this mean a high risk pregnancy characterized by a lot of excess amniotic fluid since there is no digestion happening in utero, and that that means a lot of antenatal testing until delivery. We’ve learned that delivery will be early, but hopefully not too early – though it seems like it’s up to my body and whatever it decides is its breaking point as to when our girl will arrive.

I’m 33 weeks now, and the current goal is to get baby to 34 weeks with an ultimate goal of 36 weeks. You may be wondering, why am I talking about this now? This past Monday, I found myself being admitted for preterm labor and I had one of the most terrifying experiences of my life – which I need to write about, and not just for me. Most nights I can’t sleep, not just because of the general uncomfortableness of pregnancy, but also because the amount of fluid I’m carrying pushes my ribs in places they don’t belong, and during my bouts of sleeplessness I think about other women who are pregnant and going through this same thing. I’m not alone; you are not alone. But oddly enough, we don’t talk about what makes us not so alone.

With each small piece of this journey, I see or remember a story someone has told me about their struggle that I may or may not have been sympathetic toward at the time. I feel equally embarrassed at my lack of empathy in that moment and humbled by that individual’s survival strength. Why do we try to gloss over someone else’s struggle? Is it because the thought of making it personal is too much, or is it because we can’t fathom slowing down enough to listen?

I don’t know that the answer really matters, but through all of this I’ve kept silent and now I realize it’s time to speak about it. There are things I will want to share – not just for me, but for you too. You – a mama who heard her baby is going to struggle, who heard a medical term she was completely unfamiliar with and is now learning all she can about it while trying to maintain some normalcy. A family who finds themselves in a NICU at their local children’s hospital, or in a surgical meeting hearing how their child’s issue will be fixed and is trying to separate out the emotion from the reality so they can just hear what’s being said. Dinnertime conversation changed from favorite television shows and random happenings to the most recent medical bill that arrived and whether or not you had six or more contractions in the last hour.

And maybe even more, I want to share because I shared my journey with Ezra. I don’t want to keep this in the dark just because there is something imperfect – which is funny to say because I certainly don’t think of my daughter as imperfect. Something in my head was telling me, though, that these are the things that no one wants to read or see. These hard things are what we hide, because we can’t pretty them up.

So, I’ll share for her, for me, and for you. Especially for you, though, because I suspect people are telling you that it isn’t so bad, that it could be worse, that you’re lucky this is it, and so on – all the things people say because they’re not sure what to say. And while all of that is likely very true, don’t for one moment let anyone lessen your grief, your experience, or your journey. There are no degrees when it comes to something like this, and we all deserve to tell our story.

29 Comments

Beautiful Amanda! You, your baby, your words….are perfect! And you need to know, you embody empathy and understanding. You’ve been a wonderful friend to me through my struggles. I hope I can give some of of that love and support back to you in the upcoming weeks.

March 30, 2015

moxiemanda

Thank you, Chantale. I don’t really think I can say how much your friendship means to me <3

March 28, 2015

janae

I love you and your family and your strength so much Amanda. Your daughter is already so loved and she’ll know that from the start.

March 30, 2015

moxiemanda

Thank you, Janae. I love you, too, and thank you so much for your thoughts.

March 28, 2015

BeckO

I don’t have words that can help, just know you and baby girl are in my prayers. You are so strong and baby girl will be too!! love you guys xoxo

moxiemanda

You have my full support and love! Through the scary times and the times where it all feels like it’s just a waiting game for the next steps. Lots of good thoughts.

March 30, 2015

moxiemanda

Thank you so much, Heather <3

March 29, 2015

Jes Isenhour

Amazing Amanda. What beautiful words from such a wonderful woman.

March 30, 2015

moxiemanda

Thank you 🙂

March 30, 2015

carmen

Beautifully written, Amanda. My thoughts and prayers are with all of you and your words, I will spread. Thank you.

March 30, 2015

moxiemanda

Thank you, Carmen!! We really appreciate the prayers.

March 30, 2015

Adam Cathey

This is the same news that we got in July, 2011. They saw the “Double Bubble” on the ultrasound. They also prepared us for the possibility that a lot of times, the reason for this Duodenal atresia is Down Syndrome. Our daughter, Eden, was born 11/11/11, had surgery and spent the first 37 days in the NICU at Vanderbilt. Eden has Down Syndrome. She is beautiful, smart and this Dad couldn’t be any more proud of her. Carmen actually came by the hospital. My brother is married to her sister, Jenn.

March 30, 2015

moxiemanda

Adam, thank you so much for sharing with me about your daughter, Eden. This is really inspiring to me. We have heard a lot about families who have had similar issues, but have yet to actually “meet” anyone who knows exactly what it is. I can’t imagine how difficult that time was, but I can hear your positivity in your words and I love that. Again, thank you so much for sharing.

March 31, 2015

Uncle David and Aunt Jacky

We love you and are so proud of your strength. Hugs and kisses to all 4 of you. Love Uncle David and Aunt Jacky

April 2, 2015

Robin Schaefer

Beautifully written! Please let David and I know what we can do to help you guys with “house stuff” during this time. Please don’t hesitate to tell us! That’s what neighbors do!

Sending you and your beautiful family lots of love and prayers that the next few weeks go smoothly and the difficulties are just a blip in a wonderful life for all of you!!!

April 6, 2015

Jenny Cathey

Oh, Amanda, I am so glad you broke your silence to share with us. The part that resonated most with me was, “Why do we try to gloss over someone else’s struggle? Is it because the thought of making it personal is too much, or is it because we can’t fathom slowing down enough to listen?” I can tell you this is something I will think about and work through in my mind for a long time to come. I don’t know what to say, and I don’t want to say anything trite. So, I’ll leave you with this; you, your baby girl, Alex and Ezra are loved, so deeply loved, by family, friends and our good Lord above. May this love envelop each of you as you face what the next few weeks will bring.

April 10, 2015

sarah

Hello. Thank you for writing this article, I am 34 weeks pregnant and have just found out my daughter has Duodenal Atresia, any words of advise or wisdom you can provide would be much appreciated. We are being tested for down syndrome next week so finding it hard to think of anything else at the moment. Thanks